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Employees who don’t want to disclose genetic information about themselves and their families to their employers may have to pay a stiff price for that privacy in the future. The Preserving Employee Wellness Programs Act (H.R. 1313), a GOP-sponsored bill currently under consideration in Congress, could dismantle the employee privacy protections of the Genetic Information Nondiscrimination Act (GINA).

GINA prohibits employers from discriminating against employees based on their genetic information or requesting or requiring their employees to provide such information. Currently, there is an exception to GINA that allows for employees to knowingly and voluntarily provide that information as part of employer-sponsored wellness programs, as long as: (a) only the employee and licensed health care provider or certified genetic counselor is able to access the employee’s individual results; and (b) identifiable genetic information is only provided to employers in aggregate. The proposed legislation would permit employers — overriding this exception to GINA — to collect information about employees’ and their family members’ (as defined in GINA) genetic information in connection with administering employee wellness programs. Notably, GINA defines “family member” broadly and includes fourth-degree relatives of employees and their dependents.

Expanding upon previous EEOC guidance (available here: https://content.govdelivery.com/accounts/USEEOC/bulletins/1497cbf), employers would be able to deny healthcare insurance incentives of up to 30 percent of the total cost of family coverage (which could amount to thousands of dollars) to employees who refuse to provide such information by virtue of participation in a wellness program. This reward represents an increase from the EEOC’s previous guidance on wellness programs, which limited such incentives to 30 percent of an individual’s coverage cost.

But employers should not begin to develop wellness programs that collect genetic information just yet. While the bill seeks to empower employers to promote health and wellness among employees, it has been met with stiff opposition from House Democrats and approximately 70 other advocacy groups. Opponents have criticized it for penalizing employees who wish to keep their genetic and medical information private from their employers by, in effect, charging them to do so. The statute would weaken the oversight powers of the EEOC, which currently regulates employer-promulgated wellness programs, and instead delegate that authority to the Department of Labor, Department of Health and Human Services, and the Department of the Treasury.

If this legislation passes, employers should be mindful of the array of concerns that accompany the collection of their employees’ and family members’ genetic information – such as, for example, overall employee morale and the potential for violating GINA’s protections against employment discrimination once in possession of such information.

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